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I have been full time home caring for my wife for 7 years +.
Upon diagnosis the Memory Clinic said my wife was discharged to the care of her GP as they did not do any follow up checks or care. GP said they did not do any care or checks for a person with dementia, but updated her notes, and my notes as carer. The Local Authority Adult Social Services did a care assessment as requested, but then on financial assessment found my wife would be a "self funder", and so they said "You're on your own" Thus, no care or checks offered, and a social worker would only be allocated if need or crisis arose.
Without training I had to find out about this terminal illness by my own research and attending such courses as some charities organise.
Charity workers and volunteers act as if they care. Doctors, nurses, social workers act as if they are too busy to give time and act as if they'd rather be somewhere else!
The illness that is the biggest killer in modern day Britain and, when it occurs in the family, no health official or organisation (other than charities) offers any guidance. care or help, even though the family carers saves the system enormous time and money. The Government, central and local, the health services take advantage that a family member may care. Care allowance, not applicable to me as a pensioner, is offered at a derisory £2.50 per hour. Absolutely shocking lack of help or care!

I care for my Father with vascular dementia diagnosed in 2021 and my mother with Alzheimer’s diagnosed 7 months ago however took 18 months for a diagnosis.
I take it every day as it comes. Dad is quiet and stares into space and mum just wants to go home to her mum and dad (her mum passed away over 40 years ago and her father coming up to 40 years) It is heart breaking 💔

Dementia is one of the worst things that can happen to anyone to have your mum not even know who you are is devastating. Every single time you see them they ask who you are. Having to say to your mum that you are their daughter is heartbreaking. There is so much that you want to say to them but you know that next time you will have to say it again as they will forget you again please please put more money into dementia and help people cope with this terrible illness.

My wife had dementia for 4yrs it started before we realised it got worse and this we'd 18th she died from it. Her brain not knowing to eat or drink. Marion finish drugged as on end of life treatment. We gave to spent more money on research and push the issue. Now my children not our and its not good. Post

I do think that I have dementia , I have bad memory problems , words and phrases i don't say regular I can't remember, people I don't seee regular I am not able to identify them and remember their name , and places and items that I don't see and use I don't recognise , and I do sometimes do really feel depressed

My 86 year old husband showed signs of dementia about 14 years ago. He was referred to the Memory Clinic; he passed the simple test but had brain scans which revealed change attributed to ageing. He was referred back to the GP; he had more simple tests as his memory got worse but he passed - he was a mathematician so I he tests were simple. Again he had a brain scan but referred back to the GP. Diagnosis was difficult. Eventually when the GP questioned him about medication he has to confess I had taken charge because he had taken two of the same drug cause the were different generic packaging! He was again referred to the Memory Clinic who gave him a more complex test. He couldn’t pass so was eventually diagnosed with Alzheimer’s. Apart from one visit from the Alzheimer’s Society we have managed alone until now. He is in the latter stages and I am his 24/7 carer. I am 82 and have Rheumatoid Arthritis. Apart from Alzheimer’s my husband has long term health problems too. He his disease has trapped us both. Having worked and saved until I was 70 to support us - my husband retired at 55 due to health problems we are prevented from claiming heating allowance because we both get private pensions. Life is hard I pay for carer help to wash and dress him.

My husband has dementia. Where do I start? We have good days and bad days, but more bad these days. When I look at him I don't see the man I knew. I am losing him every day. The recent advert hits the reality of dementia. I keep losing a part of my husband each day. We are at the stage he knows at times he can't do things and that destroys me, to see the look in his eyes and the distress on his face when he realises he can't do a simple task. There is minimal support for people going through this, it's progressive. On the physical side I work so we have a home etc..buti worry daily is he okay, is he on the floor, has he eaten... but there is no support on that side, but mentally it destroys me everyday to see him suffering time and time again. I know I'm not the only one going through this xx

When talking to someone with dementia, about a death, we should use the words ‘death’ and ‘died’, not the various euphemisms, which may well be confusing for them.

As a Carer to my husband, diagnosed with Lewy Body Dementia in 2021, I had to move him into Care in April 2022, when he completely lost the use of his legs. We were lucky that his care home had a dementia section, and a nursing home section, so he could be moved to the nursing area in October 2023, with minimal disturbance for him, and still see the same staff, and have familiar objects from home around him.
When he was ill and, nearly a year later, dying, because I had Power of Attorney I could specify that he should stay in the Home, and not be moved to hospital, where he would have been frightened, among strangers, and much less well cared-for.
So my advice is, plan ahead, if you are fortunate enough to be able to do so. It has given my family and me great comfort to know that my husband was lovingly cared-for, and he died peacefully, painlessly and surrounded by love from family and staff.